A Brain Awareness Week Interview with Founder Barb Fonseca on How the NODCC Educates the Medical Community

By Miriam Bernard

.

Happy Brain Awareness Week from the NODCC! This week, across the globe, doctors, neuro-centered organizations, and members of neuro-divergent communities are celebrating this annual observance by sharing stories and inspiration about why the brain is a miraculous organ. It is a time to focus on education of the greater population and increasing brain research. What many may not realize is the NODCC’s dedicated work behind the scenes to educate medical professionals—including doctors, nurses, and medical centers—about disorders of the corpus callosum. Recently, we spoke with NODCC founder Barbara Fonseca, who leads these educational efforts, to gain insight into this important process.

Barb shared, “When a family member is diagnosed, the first instinct is to ask, ‘Where do I go to learn more about this?’ Unfortunately, the initial search results online do not always provide the best information. Our goal is to equip doctors with reliable resources so that the first information families receive offers a realistic and positive outlook on this disorder.”

Surprisingly, many doctors and nurses are not well-versed in the realities of DCCs. As the first point of contact for families, it’s crucial that they have the right knowledge and resources to guide them. That’s where the NODCC steps in!

We’re proud to share that our organization is represented at three to four medical conferences per year, making connections with doctors and professionals so they can provide the NODCC’s resources to their patients instantly. This is part of our advocacy for our families and gives opportunities to share our story with those who need it most: those on the front lines, sharing DCC diagnoses with families.

Additionally, in January 2025, the NODCC disseminated a mailing about our mission and goals to 150 fetal care centers nationally, putting valuable resources in the hands of those most likely to encounter parents just discovering their child has a DCC.

Conferences we have attended (and in some cases attend annually) include those hosted by:

Click any of the live links to learn more about these organizations and their conferences!

At these conferences, Barb, and sometimes other board members or NODCC representatives, share our mission with attendees and capture their information to create a tether to conference attendees’ home medical offices. It’s not uncommon for Barb to have over 100 conversations in a single conference, gathering information from all those individuals and creating a beautiful web of connection nationwide and worldwide, getting the NODCC’s story and resources in the hands of so many. Barb explained, “I can’t tell you how many times I meet a doctor who says, ‘I didn’t even know there was an organization like this.’” It’s rewarding and incredibly important work.

Barb shared, “Additionally, before every NODCC conference, we mail out information and invitations to medical centers in the local area to ask them to attend.” Our goal is for these medical professionals to see every facet of what we’re about.  Since nonprofit organizations rely on and benefit from lifting one another up, the NODCC also shares resources with as many nonprofits as possible.

“Our goal is to be in every major medical center across the country,” Barb stated. “We want every pediatric department to know who we are. Fetal care centers are a growing resource, but it would be invaluable to have information about DCC in every pediatric neurology department. I’d also love to see us expand into genetics and attend a genetics conference.” As you can see, the NODCC is working constantly behind the scenes to get resources in the hands of families by any measure. Our goals in this arena are ambitious, and we’re excited to see how far our educational efforts will reach in 2025.

Attending medical conferences and sending resources to medical centers is associated with a significant portion of the NODCC’s annual budget, and the more funds dedicated to these endeavors, the farther the reach of the NODCC extends. This Brain Awareness Week, we invite YOU to join in sharing with your local medical care providers the importance of spreading awareness of disorders of the corpus callosum. You could even consider allocating a donation meant specifically for advocacy in the professional medical field to fund future conferences, or set up a fundraiser in your circle to do so. Click here to begin that process, and when prompted, check the box stating “I prefer my gift to be used to support the: Medical and Community Outreach Program.”

In the end, all we do is for YOU, our family, our community. You are the “why” in every action we take, and we hope this year’s Brain Awareness Week leaves you inspired and invigorated to spread awareness about DCCs and the precious ones we know, whose brains may lack that bridge, but whose hearts are oh-so-big.